Sunday, March 8, 2009

ME/CFS is not just being really tired

Last month I posted a link to Pamela Weintraub's article about why recent research on ME/CFS is bogus. The study found that experiencing sexual abuse in childhood puts one at greater risk for ME/CFS. Weintraub argued that the methodology was highly flawed, and that the study was part of an ongoing effort on the part of CDC to misclassify ME/CFS as a psychological disorder.

In response, a commenter pointed out:

It should be kept in mind, however, that it is well possible there is a link between trauma and CFS/ME - and it does not in any way indicate that the illness is psychiatric or psychosomatic in origin (or that it could be treated with psychotherapy), even though that's what the media often makes out of it. It's well-known that in lab animals trauma early in their life causes irrepairable damage to the HPA axis.

This is a reasonable argument, and it's true. Stressors do affect the immune system, and exploring these kinds of mind/body connections doesn't necessarily imply that the resulting diseases are all in the patient's head.

So what's the problem with this study, and others like it?

Many of the subjects don't actually have ME/CFS.

People with ME/CFS feel crushing fatigue, significant pain, and post-exertional malaise. The latter term means that any exertion -- even just walking to the bathroom and back -- causes them to feel much, much worse. The CDC's definition, however, only includes pain and post-exertional malaise as possible symptoms.

This is important. There are a lot of conditions that can make people feel chronically tired for a long time. One of them is clinical depression. If you're looking for the effects of childhood sexual abuse, and you include subjects who have clinical depression but not true ME/CFS, you're going to seriously skew your results.

It's not simply that they've funded a study focusing on a psychological cause. It's that they've extended the definition of ME/CFS to include people who might be suffering from clinical depression instead.

Perhaps the most notable thing about the Emory study, Johnson points out, is that it fails to cite a study performed in 2001 that asked the identical question. That study demonstrated that people with CFS actually have a lower incidence of childhood abuse and trauma than controls.

5 comments:

This cam up on my google alert. I was particularly interested because you quote Pam Weintraube. I was diagnosed with ME/CFS but after a chance course of antibiotics improved my arthritis and muscle weakness my GP considered Lyme disease and now after long term antibiotics I am significantly improved. Fatigue being one of the last symptoms to go. However I can walk upstairs again something I could not do for 3 1/2 years.Pam Weintraube has written an amazing book Cure Unknown and her articles in Psychology Today found through the link on your post are well worth reading by anyone with ME/CFS diagnosis.Doctors are not considering Lyme Disease properly before giving mE/CFS diagnosis it should be a clinical diagnosis because blood tests are unreliable. Through Eurolyme I am in touch with many more patients like myself who were diagnosed with ME/CFS and eventually found that in fact it was Lyme Disease and on adequate antibiotics have got their health back. see UK charity website www.lymediseaseaction.org.uk or google and find other charities in USA and Canada.Much interesting research is being done about these illnesses also see the trailer in www.underourskin.com

I'm glad you're feeling better than you were and hope you continue to improve. People with late-stage Lyme, as far as I'm aware, have been treated about as well by the medical industry as people with ME/CFS ... which is to say not very. It blows my mind that the test they usually use to diagnose it is so unreliable -- lots of false negatives.

How reliable is the best Lyme test? Is there any way to definitively find out if you have Lyme besides taking long-term antibiotics?

The best test is PCR and if it happens to be taken where there happens to be the bacteria and it comes back positive there is no denying you have Lyme but as the bacteria likes to move into tissue especially collagen then there is no sure way of knowing where to capturing it. Otherwise it is a Western Blot one of the best Labs being Igenex in California but even they say negative does not rule out lyme so less than 50% of blood tests can miss lyme patients.http://www.lymeinfo.net/medical/LDSeronegativity.pdfThe best way to see if you have Lyme is to be clinically assessed by Lyme literate medical doctor LLMD. Worth every penny. I was lucky that Amoxycillin improved my symptoms and led my GP to suspect Lyme Disease eventually I saw LLMD who confirmed her diagnosis.Anyone with ME/CFS should at least read about what is going on with Lyme and at least properly exclude it as a diagnosis. See the websites I have mentioned and Lyme disease association website USA one. The smallest tick is the size of a poppy seed so you are not always aware you have been bitten, less than 40% actually get a rash and it can be years latter that symptoms appear often after something has compromised your immune system.

I have set up a petition during the week to complain about the CDC using the empirical/Reeves definition for CFS research (the definition that was used in this study). Just to point out that I have had concerns about the definition since mid-2007 when I first read the full paper describing exactly what was done (this can be checked by googling my name).

The petition might help complaints about the definition at the upcoming CDC meeting about their plans for the next five years or other meetings such as CFSAC meetings. For anybody interested, the address ishttp://CFSdefinitionpetition.notlong.com i.e.http://www.ipetitions.com/petition/empirical_defn_and_CFS_research/index.html

Anyone anywhere in the world can sign it and comment (many people from outside the US already have).

Without a proper definition, we can have little confidence in research. All sorts of research can be interesting but if the research includes a very heterogeneous group, it's usefulness isn't very high.